What Would Motivate, or Deter, Participation in HIV Cure Research?

By Olivia G. Ford

September 16, 2016

Knowing that participation in HIV cure research could pose health risks to participants without providing them direct benefits, a central ethical consideration in this area is what motivates participants to get involved.

Jennifer Power, Ph.D., of La Trobe University, presented findings from the HIV Futures Study -- a cross-sectional survey of Australians living with HIV that asks questions about health and wellbeing including, for the first time last year, questions regarding HIV cure research. Among the 906 respondents, only 40% believed that a cure would become available in their lifetimes. This belief was associated with greater willingness to participate in a trial, showing that responses may be motivated by unrealistic optimism.

The most important potential cure outcomes to respondents were not being able to pass HIV on to others and not being at risk of ill health. This finding, said Power, may point to an assumption that a "cure" would indicate total eradication of HIV, when ultimately the cure for HIV will likely entail a non-sterilizing cure or remission.

Of those responding to the survey, 82% said they'd be willing to participate in an HIV cure study, though 80% said they would be less likely to do so if their treatment regimen or overall health would be compromised. These findings reveal high interest in HIV cure research in Australia, though, as Power stated: "We need to ask more questions about the risks that people might consider to be acceptable, and what would motivate someone to accept such risks" -- as well as the ethical implications of asking people to take them.

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To explore perceptions of one key potential risk, David Evans of Project Inform presented data from that 400-person cross-sectional survey of adults living with HIV across the U.S., as well as a dozen key informant interviews and 10 focus groups of people living with HIV, looking at willingness to undergo analytic treatment interruptions as part of cure studies.

While the definition of a functional cure for HIV may be remission after a period of time off HIV medications, current laboratory tests to measure the HIV reservoir are not sensitive enough to demonstrate HIV clearance. Therefore, the best available test right now is to interrupt antiretroviral therapy -- known as analytical treatment interruption (ATI) -- for a period of time or until viral rebound occurs. Therefore, some (but not all) HIV cure studies may require an ATI.

Respondents in Evans and colleagues' study expressed high, if ultimately hypothetical, willingness to undergo ATI -- though responses overall were complicated by the fact that few understood the risks of ATI. Among motivations reported, altruism was common: People wanted to contribute to research and help find a cure even if participating would not cure them. Financial benefits, including study incentives and not having to pay for HIV meds for a while, were also a motivator. Others were motivated by past experience with treatment interruptions.

A subset of potential study participants considered ATI to be "too much risk," citing concerns about the possibility of viral rebound or development of drug resistance. Increased risk of transmitting HIV to partners was also a major concern.

Another interesting, related finding, which Evans noted in the Q&A, was that "longest-term HIV survivors" -- those who had been living with HIV for decades -- tended not to be interested in participating in cure studies involving ATI, despite reporting treatment fatigue and multiple side-effects over many years of HIV treatment.

Based on these results, recommendations from researchers included providing a culturally competent, high-quality prevention package to study participants and their partners, such as potentially offering pre-exposure prophylaxis (PrEP). Further, careful consideration of whether treatment fatigue motivates volunteer participation in ATI studies must be made to prevent recruitment efforts from exploiting that potential incentive.

With HIV cure research on the horizon, explore some of the other top ethical questions being asked in advance here.

Olivia G. Ford is a contributing editor for TheBody.com and TheBodyPRO.com.

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